Kennedy's Disease Association

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Kennedy's Disease Chat Transcript   10-15-2011

Topic:  Open Forum

Host:  Bruce Gaughran

 

Bruce
Morning Dan, I was getting lonely
DanT
good morning Bruce
Bruce
How are things going?
Bruce
Connection reset by peer
DanT
About normal for me, how are you?
Bruce
Doing fine.  It is a beautiful fall morning here in Georgia.
Bruce
Morning Gary
DanT
Nice here is SW Florida, not so humid today.  Where in GA are you? My sis lives near Atlanta in Dallas
Bruce
I live on the TN boarder.  15 minutes south.  I have family in Marietta.
Bruce
Morning Stewart
Stewart
Good morning
Bruce
Stewart, I used to live (many years ago) in Anaheim and Huntington Beach.
Bruce
Morning UTE
DanT
Good morning Stewart and Gary, Bruce that's a pretty area When I retired from the Navy I considered moving there
DanT
good morning UTE
Bruce
We love it here.  We live on 3½ wooded acres on a bluff overlooking Cherokee Springs Lake.
Bruce
UTE, have you had any of the white stuff yet?.
Gary_KC
Connection reset by peer
DanT
Nice, now I don't think I could deal with the hills, need level ground now!
Bruce
My golf cart gets me around nicely.
UTE
Good Morning all...Dan...what years were u in the Navy?
Bruce
Ft. Myers is a great place.
Bruce
We lived in Lakeland for several years and like it there.
Bruce
Gary, are you having trouble with the chat room this morning?
DanT
I was in from 1972-1993
Bruce
I was also in the Navy from 66-70.  Two tours in Vietnam.  One in Country on the river boats.
DanT
FT Myers is nice, enjoy it here
Bruce
Morning Lou
UTE
I was Navy 68-72 in Oregon and Korea
DanT
I caught the tail end of Nam on a DD doing NGFS on shower shoe factories.
Bruce
My first tour was on the Mauna Kea, AE-22.
Stewart
Ever year we spend a week or two in Ft. Myers (cape Coral).
Bruce
I believe some people are having problems with the chat room this morning.  Gary for one.
Bruce
Did yoy see the notice about the research grants?  We were pleased we could support three of them this year.
DanT
I was on the Kilauea AE-26 in 79-80, not a bad ship
Bruce
DanT, did it have the FAST system for transfering ammo?
DanT
I saw the grant announcement email, it is good that research is being done
loutudor
Good morning...I was having a temporary problem
Bruce
Yes, we are fortunate to have several labs around the world focused on KD research.
UTE
Is the ASC grant looking the most optomistic?
Bruce
Lou, it appears Gary also is.  What is the problem if I may ask.
Stewart
I got the Email, good news
loutudor
The page froze...
Bruce
IGF-1 and ASC-J9 still are the furthest along and still look promising.
DanT
Bruce, yes it did though I was in CIC so don't know much about the mechanics
MikeG
Kennedy's Disease Chat
Bruce
DanT, I wonder what they use today.  That was forty plus years ago.
Bruce
Morning MikeG, some of the guests are having technical problems with the chat this morning.
Gary_KC
Connection reset by peer
Bruce
Stewart, is Coral Gables a vacation spot or visiting relatives and friends?
MikeG
Hi Bruce, what kind of problems are they having?
DanT
Last time I on base in Norfolk, didn't see many differences on the supply ships, though a lot more is done with VERTREP now I think
Stewart
Any word on the conference How many people signed up, I’m planning on being there.
Bruce
Lou said the page froze up and Gary has not been able to tell us what is wrong.  He has signed in and out several times already.
Stewart
I stay with friends
loutudor
All tech problems resolved here now...
MikeG
The tabs may be confusing people...
Bruce
Stewart, I believe we are close to fifty plus fifteen researchers.
MikeG
... and the floating windows
loutudor
Looks to be a great conference coming up!
Bruce
Did anyone else have any problems this morning with the chat room?
MikeG
Lou, Paula wanted to know when the newsletter is coming out?
loutudor
Next week for the newsletter
Bruce
Ref. the conference, the researchers are really looking forward to it again.  They probably are as enthused as anyone.
Bruce
I was pleased to see the Dr. Lieberman was able to rearrange his schedule so he could come.
DanT
One of these years I'd like to attend a conference but this year, don't have the means.  Are they more for researchers or us?
Stewart
Great, the same week, Mon Tues, I’m signed up for the NIH study
MikeG
ok, tnx
Bruce
They are for everyone.  Two days are focused on those of us living with KD.  The last day the researchers bring us up to date on their research and then go into a private session for the afternoon to share their findings.
DanT
sounds interesting, maybe next year
Bruce
One of the best sessions is the breakout sessions for the men and for the spouses and family members.  It is a chance to share your personal feelings and concerns.
Gary_KC
Good morning! This is Gary joining in from Kansas City. I could not logged in for a while this morning.
MikeG
We have a fantastic group of doctors & researchers - and it is really nice to be able to sit down and talk to them one on one!
Bruce
This year we plan to have some building contractors there to address home modifications (making the home more accessible).  It should really be interesting.
MikeG
what was happening when you had the problem, Gary?
Bruce
Gary_KC, my boy, I am glad you could finally sign in.  Thanks for your patience.
Bruce
Gary, every time you tried, you showed up like you were in the session.
Gary_KC
MikeG, it showed "Welcome to Kennedy's Disease chart" but it did not display any messages and I could not type.
Bruce
We believe one or two of the research grant recipients will also be at the conference this year.  They are checking their schedules.
DanT
Bruce, I'd like to be there for that, assessability is becoming an issue for me.  Are there any plans to video the presentaions and make them available?
Gary_KC
Kennedy's Disease Chat
Bruce
DanT, no, we tried that a couple of years, but it didn't work out well.
MikeG
We may be able to do a webcam though...
MikeG
just leave it running
Bruce
I'll leave that subject up to the AV specialists.
MikeG
not too clear for video however.
Bruce
It is hard to believe the conference is less than a month away.
MikeG
yep
Bruce
Lou, do you want to briefly tell everyone about the golf tournament?
loutudor
The golf tournament raised approx $12,000.!
loutudor
We're hoping to do more in other locations
Bruce
This was the first "annual" golf tournament.  It was totally set up and run by some associates in Texas.  Murray was on the team.  Most of you know him.
loutudor
This was done in Houston, TX
Bruce
Also, interesting, we had fourteen new associates sign up in the last month.  The is a record for the KDA.
Bruce
We now have 889 active associates and over 1,000 registered.
loutudor
I hope more people are giving us their e-mail addresses....so much info goes out via e-mail
MikeG
Paula had a few in Australia who wanted to get copies of KDA announcements - I told her to have them sign up on the web site...
MikeG
that's all we need isn't it?
UTE
Doubt question, whats the difference between being an associate and registered?
Bruce
Also, in the next few weeks the KDA Cookbooks will be available.  This is the 2nd edition.  Lou and a few others have worked hard on this project.
loutudor
The new cookbooks are really good!
Bruce
Since the KDA for legal reasons does not have members, we have associates.  Active associates are those that are on our mailing list (have not opted out).
MikeG
yum!!!
loutudor
The newsletter next week will have all the info for ordering them ...plus more
Bruce
Registered are associates that at one time signed up, but perhaps changed their email address and did not notify us or decided they did not like the KDA emails and opted out.
Bruce
Since we launched the new website, we now are reaching people in countries that could not view it before.  China, Indonesia, India, etc. are some of the countries that are now seeing the KDA site.
MikeG
I've opted out of a lot of things but don't think I'll EVER opt out of KDA info!!!
loutudor
Does everyone here today get the KDA e-mails?
Stewart
So we should actively encourage our friends and family to sign up?
Gary_KC
loutudor, yes, I got it yesterday.
MikeG
YES!
UTE
By e-mails u mean the chat date announcements?
loutudor
Thanks Gary
Bruce
I was a little concerned the other day.  My right arm felt weaker than normal.  Fortunately, the weakness went away and I was able to do my regular exercise program the next day.  There was only one other time since I went on dutasteride that I had unusual weakness.
loutudor
Newsletters, announcements,...
MikeG
how long have you been on it Bruce?
Bruce
UTE, yes, any type announcement from the KDA (chat rooms, annual reports, newsletters, research grants, research update, etc.)
Bruce
Eight months today.
Stewart
Yes, I get the Emails, I also get info once in a while from facebook
MikeG
are you left handed?
Bruce
I average 110 minutes of exercise every other day and 15-20 minutes on the other days.  I love it!
Bruce
Nope, right.
loutudor
I believe the exercise is really essential
Bruce
It has gotten so that I have to limit my exercise program because it could go on even longer if I just based the number of reps on fatigue.
MikeG
yes, that's what I believe the trial will prove too.
Bruce
Speaking of the trial, Dr. Fischbeck mentioned that they could finish up the trial in less than a year.
loutudor
Bruce, you exercise more than most very healthy people!
MikeG
good
Bruce
Lou, I have always enjoyed exercising.  I just have to restructure my exercise program to my capabilities.  It does make a difference in my life.
UTE
Daily tasks like brushingmy teeth etc are my exercise and require a rest in between.
Bruce
:-)
MikeG
Dan, I'm in the Tampa Bay area.  You, Lou and I should plan on getting together sometime and having lunch somewhere mid-way.
loutudor
Yes, UTE, probably washing your hair, too?
Bruce
A small portion of my exercise program is stretching.  That is also good for the muscles.
loutudor
Absolutely, Mike!
Bruce
Does anyone on have a flexi-bed?  We are looking at them right now.  The kind that elevates the head and feet.
MikeG
not me - we have a foam bed.
Bruce
When I was younger, we had a water bed.  I loved it ... until I could not longer get out of it. :-)
MikeG
same here
Bruce
Gary, you are awfully quiet today.  Is your chat still working?
Gary_KC
Bruce, yes, it is working. thank you.
MikeG
we raised our memory foam bed to about 2' - easier to get in and out of...
UTE
More than the hair...getting out of the tub is a olympic task that has become needing my wifes help since I fell on my leg w/pain from knee to hip thats almost healed after weeks
Bruce
UTE, I cannot use a tub.  I have a shower with a shower chair.
MikeG
me2
MikeG
and lots of grab bars
Bruce
Yup!
Bruce
Two of my worst falls took place in the bathroom.
UTE
A few inches of foam layed on the top of the bed and even on the lazy boy lift chair has become a requirement
MikeG
I even have removable grab bars that I use when traveling... never know when you check into a hotel and there are no handicapp rooms available.
Bruce
The removeable bars are the best thing I discovered.
Bruce
UTE, I added leg extensions to our bed to raise the height.
MikeG
yep!  I may bring some more to the silent auction.  They really went over big last time in Baltimore.
Bruce
Safety is Job #1.
loutudor
What do those cost, Mike?
Bruce
I think I paid about $15@.
MikeG
that's about right
loutudor
Thanks
UTE
Because years ago breaking my ribs in a standup bath-shower, I need to use both arms to get on my knees and push with my feet and arms to get out of a jacuzzy height bath tub
MikeG
I just got a message that my anti-spyware is truned off... I wonder how that happened?  I'm going to try turning it on and see if I get kicked out of the chat...
Bruce
Michigan and Michigan State play today.  Is that right UTE?
Bruce
Ouch!
UTE
Go Spartans... I see ur right Bruce
Bruce
I also believe one of the NIH dieticians will be talking at the conference.  That will be interesting.
Bruce
I figured you would have some interest in that game, UTE.
loutudor
Always looking for diet info...
Bruce
Mike, sometime you might want to discuss 'juicing' also.
MikeG
... that was wierd ... I've never seen that message before.  Everything updated as usual - ok now.
loutudor
Mike, what brand juicer do you use?
UTE
Yah, I was born in Ann Arbor and my kids in E Lansing
MikeG
Yes, I think nutrition is VERY important.
MikeG
And I'll discuss it at the conference.
Stewart
Out of all the people signed up on the KDA web site how many have a Kennedy’s diagnosis?
Bruce
I like both areas, UTE.  I know Lansing and the State University better.  Great campus.
MikeG
it's a Jack Lalane
MikeG
power juicer
Bruce
Stewart, we are close to 600 I believe.
loutudor
Thanks, Mike...I'll lokk forward to talking with you about it at the conference
Stewart
Wow thanks
Bruce
However, many have commented that they have brothers, uncles, fathers, etc. that have the disease but have never signed up.
Bruce
We have over 100 ladies that are carriers also.
loutudor
Take care everyone...I enjoyed the chat
Bruce
Thanks Lou
loutudor

MikeG
well, folks I've got to run.  It was great chatting with everyone this morning.  Stay safe.
Bruce
Yup, guys, I need to get my dog out for a walk before the games start.  Please stay upright.  And, thanks for attending today.
UTE
See yall
Gary_KC
Nice chart. Thanks all. Bye.
Stewart
I alway enjoy this thanks
UTE
Have a good wk Dan
UTE
Hi Dean, hows it going?
dean
Good morning everyone
UTE
where are you located?
dean
Pa
UTE
everyone except me signed off as our mtg started an hr ago
dean
Who is taking dutasteride? And is it working for you?
UTE
I'm not taking muchg of anything accept chlosterol meds
UTE
But Bruce has been taking dutasterude for 8 mos
dean
I am thinking of taking it to see if it works. Do you know if it is working for him?
UTE
I think so... and exercise too
dean
I see form the chat that he was on earler and signed off .
UTE
how long since you were diagnosed with KD
dean
I am 57 how and was diagned when I was in my late 30's early 40's. How about you.
dean
sorry for the missed spelled words.
UTE
I was diagnosed at about age 46 and Im 65 now
dean
Are you able to still walk.
UTE
Still able to walk but use a walker alot in the house and power wheelchair both in and out of the house
UTE
the main thing is trying to avoid accidental falls
dean
I can still walk but getting weaker. Muscles hurting.
UTE
What kind of work do you do or what keeps u busy?.
dean
INot working at this time. Thinking about retiring.
dean
I am thinking about SSD.
UTE
are u on medicare disability
dean
not at this time
dean
do you think that there is something out there for us for a cure?
UTE
if you do go on disability be sure to ck out the info on the KD website and mention KD is similar to ALS
UTE
this website will also under research tell u about such investigations of possible research as IGF-1 and ASC--J9
dean
They are the two compound that we are hoping for?
dean
How far along are they with that? Do you know?
UTE
these seem to be the most promising research per Bruce in todays meeting...our meetings are the 1st and 3rd Saturday of each month
UTE
I'm not to up to date on the research but theres a conference with some of the drs and kd members involved next month
dean
I guess I have to get on the chat early and ask Bruse about that. I have to go and I will chat with you the 1st of next month.
UTE
Have a good week
dean
What is the date of the conferance?
UTE
Nov 9th thru 11th in baltimore
dean
Thank you UTE. Talk to you later.
UTE
sO LONG